Re: (unknown)

[Guest guest]

Dear ,

Hi there. Welcome to the group. It is a fantastic group of people who offer friendship, a shoulder and help. My husband and I have found out so much info and talked to a,lot of great people. We have a 3 year old son who is mds and a 5 year old on. They only delay we have really found is williams speech, buty that is coming along in leaps and bounds. We live in Adelaide Australia.

Look forward to hearing from you.

Love Kirsty

Mum to on 5 and 3 mds

(unknown)

August 8th, 2002Hello!My name is and I am new to this group.I wanted to introduce myself because I am looking forward to being apart of this group and I wanted you to get to know me and my family. I have a son named Alec who was born with MDS. Alec is 16 months old and everyday I am amazed at the joy he gives me; it is truly a gift. My husband and I are in love with Alec he teaches us so much everyday.I look forward to getting to know you;I would welcome anyone to write me. I would appreciate your guidance and support. My email is jen.robinson@...Sincerely, (Alec's Mom)Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

Dear ,

Welcome to you! My name is Barb Martz, I live in Western PA, USA and I

have been to South Dakota only as a stop on my way to Montana. My husband and I

thought if we ever got back out that way west again we would spend a bit of time

in your state. We can say that we have been to the famous Wall Drug, the corn

palace, and that is about all. It looks like a lovely state though. Anyway,

What a Valentine's Day gift na's diagnosis must have been to you! I heard

the news when our Jonas who is now 22 mo old was only 10 days old. He was a

premature baby staying in the NICU at the hospital for his first 22 days, and

for reasons which would make this too long of a story, we decided to hear the

news of his DS (we did not know it was MDS for three more days) and of a heart

problem all over the telephone. ( I thought he was just going to tell us about a

heart problem!) SURPRIZE! The doctor was a really good one, we love him to

this day, and I want to say, I MADE him tell me on the phone. I cried my eyes

out that night, as it was evening when we found this out on the phone. We were

glad in retrospect that we had that time to grieve and mourn the child we

" thought " we had and not hold him crying our eyes out. I actually fell asleep

in Bob's arms crying, and when I awoke, I still had tears streaming down my

face. I never knew before then that a person could cry in their sleep! So we

got up in the morning and we could not get ourselves to the hospital fast

enough. We had about an hour to drive to the hospital each day to be with Jonas

in the NICU. When I got there, and I was so close, I could not wait to scrub in

and hold him! I forgot to put a gown on, and not a nurse or doctor got in my

way or asked me to put one on either! As soon as I held Jonas again, everything

from the night before just disappeared completely, and we have never looked back

or felt the least bit sorry for ourselves again. I am so happy to hear you say

that you went from saying Why Me God? in despair, to Why Me God? in awe. I did

the same thing to some extent, but because Jonas' birth was a very big miracle

to me anyway (check out the Martz surname under personal stories at the

www.mosaicdownsyndrome.com sit) I told Bob as I hung up the phone that night,

" Well, one thing is for sure, God meant for Jonas to be on this earth for some

reason, or he would not have made it this far! " I guess I knew right away that

there was a reason, I just did not know what it was. Now, I just see the

blessings that Jonas is to us. He is loved by all those who are touched by him,

and that goes for people who already know he has MDS, as well as people who do

not know. I am patiently waiting to see what plans God has for Jonas as well as

our seven year old son who is profoundly gifted and challenges us far

more than Jonas ever has so far! was a challenge from the first, and by

the time he was Jonas' age, he was asking me questions that I was floored by. I

guess I get to see motherhood from both sides so to speak. I hope Kindergarten

is going well for na, please let me know how she is doing. I lift your

entire family up in prayer, please kiss all your dear ones for me!

Blessings to Your Family,

Barb

Martz

Mom to

Jonas 22 mo (MDS) & 7

" I do

not believe in miracles, I rely on them! "

(unknown)

Hi,

My name is Bultje and I live in Sioux Falls, SD.

My beautiful daughter, na, was diagnosed with MDS

on Feb 14, 2000, two months before her fourth

birthday. I thought, at the time, that I was being

punished by God. It took me no time to realize that I

was actually being quite blessed by Him, entrusting me

with such a special child. I still say " Why me,

God? " , but now I am saying it with great awe instead

of pain. I am brand new to this site and am looking

forward to hearing from some of you. I have no one in

my area to visit with about MDS, and since na has

no physical appearances or health problems stemming

from MDS, I think I would feel guilty going to a DS

meeting. She is an active little 6 year old who

starts kindergarden in two weeks. She will have to

have help with math and reading, and she will attend

speech, but she can do everything else all the other

kindergardeners can do. na also has an older

brother, Trevor (10) and a younger brother, Bryson

(4). I enjoyed reading all the stories on the web

site.

__________________________________________________

[Guest guest]

Welcome to the group:

I have a daughter who is 2 and her name is brianna. I

know how you felt and how you feel. My husband

coaches arena football and if we ever are around sioux

falls, i will email and let you know because i would

love to meet you and your daughter. good luck

Shiver

mom to sydney 3 and brianna 2(MDS)

--- Martz wrote:

> Dear ,

> Welcome to you! My name is Barb Martz, I live

> in Western PA, USA and I have been to South Dakota

> only as a stop on my way to Montana. My husband and

> I thought if we ever got back out that way west

> again we would spend a bit of time in your state.

> We can say that we have been to the famous Wall

> Drug, the corn palace, and that is about all. It

> looks like a lovely state though. Anyway, What a

> Valentine's Day gift na's diagnosis must have

> been to you! I heard the news when our Jonas who is

> now 22 mo old was only 10 days old. He was a

> premature baby staying in the NICU at the hospital

> for his first 22 days, and for reasons which would

> make this too long of a story, we decided to hear

> the news of his DS (we did not know it was MDS for

> three more days) and of a heart problem all over the

> telephone. ( I thought he was just going to tell us

> about a heart problem!) SURPRIZE! The doctor was a

> really good one, we love him to this day, and I want

> to say, I MADE him tell me on the phone. I cried my

> eyes out that night, as it was evening when we found

> this out on the phone. We were glad in retrospect

> that we had that time to grieve and mourn the child

> we " thought " we had and not hold him crying our eyes

> out. I actually fell asleep in Bob's arms crying,

> and when I awoke, I still had tears streaming down

> my face. I never knew before then that a person

> could cry in their sleep! So we got up in the

> morning and we could not get ourselves to the

> hospital fast enough. We had about an hour to drive

> to the hospital each day to be with Jonas in the

> NICU. When I got there, and I was so close, I could

> not wait to scrub in and hold him! I forgot to put

> a gown on, and not a nurse or doctor got in my way

> or asked me to put one on either! As soon as I held

> Jonas again, everything from the night before just

> disappeared completely, and we have never looked

> back or felt the least bit sorry for ourselves

> again. I am so happy to hear you say that you went

> from saying Why Me God? in despair, to Why Me God?

> in awe. I did the same thing to some extent, but

> because Jonas' birth was a very big miracle to me

> anyway (check out the Martz surname under personal

> stories at the www.mosaicdownsyndrome.com sit) I

> told Bob as I hung up the phone that night, " Well,

> one thing is for sure, God meant for Jonas to be on

> this earth for some reason, or he would not have

> made it this far! " I guess I knew right away that

> there was a reason, I just did not know what it was.

> Now, I just see the blessings that Jonas is to us.

> He is loved by all those who are touched by him, and

> that goes for people who already know he has MDS, as

> well as people who do not know. I am patiently

> waiting to see what plans God has for Jonas as well

> as our seven year old son who is profoundly

> gifted and challenges us far more than Jonas ever

> has so far! was a challenge from the first,

> and by the time he was Jonas' age, he was asking me

> questions that I was floored by. I guess I get to

> see motherhood from both sides so to speak. I hope

> Kindergarten is going well for na, please let

> me know how she is doing. I lift your entire family

> up in prayer, please kiss all your dear ones for me!

>

>

> Blessings to Your Family,

>

> Barb Martz

>

> Mom to Jonas 22 mo (MDS) &

> 7

>

> " I do not believe in miracles, I

> rely on them! "

>

> (unknown)

>

> Hi,

> My name is Bultje and I live in Sioux Falls,

> SD.

> My beautiful daughter, na, was diagnosed with

> MDS

> on Feb 14, 2000, two months before her fourth

> birthday. I thought, at the time, that I was being

> punished by God. It took me no time to realize that

> I

> was actually being quite blessed by Him, entrusting

> me

> with such a special child. I still say " Why me,

> God? " , but now I am saying it with great awe instead

> of pain. I am brand new to this site and am looking

> forward to hearing from some of you. I have no one

> in

> my area to visit with about MDS, and since na

> has

> no physical appearances or health problems stemming

> from MDS, I think I would feel guilty going to a DS

> meeting. She is an active little 6 year old who

> starts kindergarden in two weeks. She will have to

> have help with math and reading, and she will attend

> speech, but she can do everything else all the other

> kindergardeners can do. na also has an older

> brother, Trevor (10) and a younger brother, Bryson

> (4). I enjoyed reading all the stories on the web

> site.

>

> __________________________________________________

>

[Guest guest]

HI Felicia,

Since patient care was rendered, the bill should be to the patient. I am

curious, was the transplant cancelled before the patient went to surgery so

that he(she) knew what was happening?

Thanks,

Bill

(unknown)

I have a patient that was admitted for a living related kidney

transplant and ended up not having the transplant and had a pacemaker

placed instead. Should the inpt admit be written off to the cost

report or should it be billed to the insurance company. Any comments

would be appreciated.

Thanks,

Felicia

[Guest guest]

yes the transplant was cancelled and the cardiac physician had the

patient transeferred to another hospital.

Felecia

Transplant Financial Coordinator

Saint 's Health Care-Transplant Program

Grand Rapids, MI 49503

PH

Fax#

>>> Vaughan@... 12/15/2005 9:57 AM >>>

HI Felicia,

Since patient care was rendered, the bill should be to the patient. I

am

curious, was the transplant cancelled before the patient went to

surgery so

that he(she) knew what was happening?

Thanks,

Bill

(unknown)

I have a patient that was admitted for a living related kidney

transplant and ended up not having the transplant and had a pacemaker

placed instead. Should the inpt admit be written off to the cost

report or should it be billed to the insurance company. Any comments

would be appreciated.

Thanks,

Felicia

[Guest guest]

Hi Felecia,

We may have to rethink the answer. What was the reason for discharge and

cancellation? Did the patient receive any medical care before transfer and

did they receive the pacemaker before they were transferred?

Sorry about the questions, but.....

Thanks,

Bill

(unknown)

I have a patient that was admitted for a living related kidney

transplant and ended up not having the transplant and had a pacemaker

placed instead. Should the inpt admit be written off to the cost

report or should it be billed to the insurance company. Any comments

would be appreciated.

Thanks,

Felicia

[Guest guest]

Hello,

I am writing in regard to another issue. We have a patient covered by CIGNA

which requires a dental clearance for an auth. His coordinator spoke with

the dentist who stated that because he had a bite wing exam in 2002 he would

not be covered for additional x-rays less than 5 yrs later, and the dentist

is not able to give him a clearance of abscesses etc without it. I called

CIGNA and they will only cover dental in a hospital setting. His dental

carrier is also CIGNA. Any ideas?

Thank you

Ewans

UMASS MEMORIAL HOSPITAL

Worcester, MA

(unknown)

I have a patient that was admitted for a living related kidney

transplant and ended up not having the transplant and had a pacemaker

placed instead. Should the inpt admit be written off to the cost

report or should it be billed to the insurance company. Any comments

would be appreciated.

Thanks,

Felicia

[Guest guest]

,

The dental clearance is apart of the evaluation and as an inclusion;

dental should be covered under his Transplant evaluation zone auth#.

Thanks,

(unknown)

I have a patient that was admitted for a living related kidney

transplant and ended up not having the transplant and had a pacemaker

placed instead. Should the inpt admit be written off to the cost

report or should it be billed to the insurance company. Any comments

would be appreciated.

Thanks,

Felicia

[Guest guest]

Yeah the transplant was cancelled before the patient went to surgery. Thank you

for your feedback it really helps.

Thanks,

Felicia

(unknown)

I have a patient that was admitted for a living related kidney

transplant and ended up not having the transplant and had a pacemaker

placed instead. Should the inpt admit be written off to the cost

report or should it be billed to the insurance company. Any comments

would be appreciated.

Thanks,

Felicia

[Guest guest]

I thought the dental clearance was covered only, not cleaning or x-rays??

We have a provider who we have Global Contract for eval/tx if pt does not have

seperate dental this is not covered.

Financial Coordinator

Allegheny General Hospital

>>> .@... 12/15/05 11:19AM >>>

,

The dental clearance is apart of the evaluation and as an inclusion;

dental should be covered under his Transplant evaluation zone auth#.

Thanks,

(unknown)

I have a patient that was admitted for a living related kidney

transplant and ended up not having the transplant and had a pacemaker

placed instead. Should the inpt admit be written off to the cost

report or should it be billed to the insurance company. Any comments

would be appreciated.

Thanks,

Felicia

[Guest guest]

Have you asked the CM if they will approve it under transplant benefits? We've had some luck with that with other payers.

on Financial Counselor Legacy Transplant Services 1040 NW 22nd Ave Ste 480 Portland OR 97210 toll free fax lmorriso@...

RE: (unknown)Hello,I am writing in regard to another issue. We have a patient covered by CIGNAwhich requires a dental clearance for an auth. His coordinator spoke withthe dentist who stated that because he had a bite wing exam in 2002 he wouldnot be covered for additional x-rays less than 5 yrs later, and the dentistis not able to give him a clearance of abscesses etc without it. I calledCIGNA and they will only cover dental in a hospital setting. His dentalcarrier is also CIGNA. Any ideas?Thank you EwansUMASS MEMORIAL HOSPITALWorcester, MA-----Original Message-----From: TxFinancialCoordinators [mailto:TxFinancialCoordinators ]On Behalf Of VaughanSent: Thursday, December 15, 2005 9:58 AMTo: TxFinancialCoordinators Subject: RE: (unknown)HI Felicia,Since patient care was rendered, the bill should be to the patient. I amcurious, was the transplant cancelled before the patient went to surgery sothat he(she) knew what was happening?Thanks,Bill-----Original Message-----From: TxFinancialCoordinators [mailto:TxFinancialCoordinators ] On Behalf OfelizondofeliciaSent: Thursday, December 15, 2005 9:48 AMTo: TxFinancialCoordinators Subject: (unknown)I have a patient that was admitted for a living related kidney transplant and ended up not having the transplant and had a pacemaker placed instead. Should the inpt admit be written off to the cost report or should it be billed to the insurance company. Any comments would be appreciated.Thanks,Felicia

[Guest guest]

Hi, yes that's what I would have expected. I have a call into the pt to see

if he checked w/the plan.

Thank you

(unknown)

I have a patient that was admitted for a living related kidney

transplant and ended up not having the transplant and had a pacemaker

placed instead. Should the inpt admit be written off to the cost

report or should it be billed to the insurance company. Any comments

would be appreciated.

Thanks,

Felicia

[Guest guest]

Check the files and links sections of the list home page.

Garnet

Margaret Wilbert wrote:

>

>

> I'm wondering if you could give me some direction. I have basal cell

> carcinoma on my lower left eyelid and it has spread since I first

> discovered it 6 years ago. I have no insurance nor savings, so surgery

> is out. I don't believe anything is " incurable " so I keep on my path of

> self-healing.

>

> The eye doctor told me the roots are the big problem with this cancer -

> they grow inward and twist and wrap around muscles and arteries, and one

> could eventually end up losing the eye. I'm thinking of trying a DMSO

> and CS solution to see if I can dissolve both the cancer and the roots.

> Any guidance as to what ratio I should use and the frequency of

> application would be greatly appreciated.

>

> Thank you for your insight and wisdom.

>

> Maggie Wilbert

> Emissary of Hope

> sdale AZ

>

>

[Guest guest]

Have you tried Cansema Ointment or is it too close to the eye for that?

Jane

(unknown)

I'm wondering if you could give me some direction. I have basal cell carcinoma on my lower left eyelid and it has spread since I first discovered it 6 years ago. I have no insurance nor savings, so surgery is out. I don't believe anything is "incurable" so I keep on my path of self-healing.

The eye doctor told me the roots are the big problem with this cancer - they grow inward and twist and wrap around muscles and arteries, and one could eventually end up losing the eye. I'm thinking of trying a DMSO and CS solution to see if I can dissolve both the cancer and the roots. Any guidance as to what ratio I should use and the frequency of application would be greatly appreciated.

Thank you for your insight and wisdom.

Maggie Wilbert

Emissary of Hope

sdale AZ

No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.10.15/1923 - Release Date: 1/29/2009 7:13 AM

[Guest guest]

Hi Irene,I am also from the Philippines. Where in the Philippines are you? You can e-mail me off the list so as not to clog the group, if you want.Jan

2009/2/15 Irene Macabagdal

hi im from the philippines

[Guest guest]

Go to "independant cancer research foundation" They specialize in all types of alternative cancer cures and have detailed methods at their well-run site. That is where the uploaded links will take you thru Yahoo. The DMSO protocols there use Vit C/DMSO transdermal and internal as a strong and inexpensive home protocol, and another one uses Cesium Chloride/DMSO transdermal and recommends doing that one with Dr Howenstine as a guide and expert, via email or telephone. The vit C method will interfere with Budwig protocol so should not be used with it. It is either-or in that case. One thing I liked about the vit C protocol is that there appears to be no die-off. Seems the cancerous cells revert to normal, so no danger of overloading the kidneys to cause renal failure. Very inexpensive and easy to do at home. Has details about what type of vit c and also the proper dilution and amount of dmso to take.

(unknown)

Marilyn,

Couldn't get through to the DMSO newly uploaded file.

Thanks.

[Guest guest]

The date was supposed to October 20, 2009 and can you imagine him making

that statement after the XMRV stuff came out?? He's worse than Reeves!!

Hugs, Michele - Nana to Twins is and , 3 yrs.,

Zachary, 5 yrs., Ethan, 9 yrs., and Tony, 13 yrs.

> -----Original Message-----

> From: Kartik Parekh

> Sent: Monday, November 16, 2009 3:54 PM

>

> Regarding White's presentation...

>

> Was that in 2008?  (On your post it says Nov. 20, 2009, which

> of course is a few days from now..).

> I certainly HOPE it wasn't from this November, because if it

> was I would not understand how he could have the nerve to

> openly deny the possibility of " viral measures " for ME/CFS

> after the XMRV  findings!  I thought White and his cronies

> would at least lay low for a while until they found out

> whether the Whittemore- findings were replicated

> (though obviously Reeves did not)...What gives??